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Wednesday, September 9, 2009

Sorry I didn't post today. I not only forgot my camera, but didn't have time to pack up the computer either. Jax did great today. It seemed to take forever, because they took their sweet time extubating him because of his history. You know I think this is the first time he's extubated and gone to post op since his g-tube in 2006.The lung perfusion scan looks good. No clots in his lungs. There is no report on it yet but my cardiologist said it looked good. The MRI doesn't show anything that we didn't already know either. It showed his blocked SVC and the other blocked veins in his upper body. He thinks he still wants to take him to the cath lab, measure the pressures, and now he's wondering if he can balloon open the SVC himself.

OH...MY....GOD

You mean to tell me that we have wasted 2 months getting a hold of Boston to now say you may be able to do it yourself. I don't know what to say. I almost want to still go to Boston even if he gets it open just to get a second opinion on Jax as a whole. We've had some major trust issues here and so I would like to see the best cardiologists in the country. But we are not saying its a no go yet because our doc may not be able to do it. I don't know, once again I'm more confused than not.

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comments:

Oh Lacey, how incredible that he was able to extubate so well! I am so relieved for you.

I can't imagine how frustrating to hear that they think they can do it now, after all the heartache you've gone through. I will definately keep you and handsom Jax in my thoughts as you make the next difficult decision.

(PS sorry about the deleted comment, I forgot I was logged in to my school email and posted as our PTO lol)

I am so happy to hear things went well today. What a blessing it would be if they could fix him right there in UT instead of having to make the trip to Boston...Please give Jax and yourself hugs for us!!!

I am so glad he is OK and done. I was so worried that I would read the opposite - where is my faith? We all stopped what we were doing and prayed this morning. Where is my faith? I checked your blog all day and prayed every time - so glad that he did well. So glad.Good luck with the decisions ahead.

So glad everything went well for Jax.That's a load removed for you. But HELLO, what's up with that Doc, now he thinks he can do it. What about before and Boston. Nothing is simple. Well wishing you luck ,wishing you concrete answers and sending prayers!

yay for Jax doing well! What the hell is the doctor doing to you guys> Screw it! Just to Boston and get a second opinion. You owe it to yourself and Jax to do at least that. I know that is easier said then done coming from and East Coast gal, but seriously, you worked really hard to get Jax's file there and you have been expecting them to come through for so long. You need to do it!

Yay for home! How frustrating to have trust issues with your cardiologist of all people!Is there someone local that you could get a 2nd opinion from to get any idea if you should trust him to do it if he says he can suddenly?

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About Me

Jaxson was born on Nov.20 2005 with Trisomy 21. He has spent half of his short life in the hospital. He has heart defects,pulmonary hypertension,severe reflux,sleep apnea, and a hypoxic brain injury that resulted in severe siezures.This is his journey.